I came across this interesting post on XMRV. Human nature and politics are always present, even in the 'pure' world of science. Personally, I fear there is an unhealthy reverence around the whole XMRV thing, people are putting too many eggs in this basket - perhaps understandably - and their hopes will be dashed if it doesn't turn out to be a significant factor in ME. If it does, great, but if it doesn't...
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I wrote a long, raging comment about how unable medical science is to admit that what it doesn't know far exceeds what it does know.
But you know that.
Reading articles on this virus and how it has / hasn't been researched properly makes me want to start a revolution.
So glad to see someone else is taking a 'wait and see' approach to all this. There's just too much desperation in the clinging to this research for my liking and, whilst it's understandable, I see all the energy expended upon raging and wrestling with doubt, fear, anger, blame as wasted energy. Maybe we've been around all this too long to be passionate.....maybe we're jaded.
And Stray it's so refreshing to see s.o. else thinks that science refuses to admit that what it doesn't know far exceeds what it does know. Every time I hear a science 'expert' on radio or TV say 'What we know ...' steam starts to come from my ears and I find myself saying aloud'...You don't KNOW .....you BELIEVE
I'm delighted the research is being done and getting global attention - this is what has been lacking in ME for so long, but we don't know 1. if XMRV is truly connected with ME and 2. if it is, what the connection is. And studies being withheld from publication just adds to the confusion. I agree, Cusp, that those who have been ill for a shorter time are probably more enthusiastic about the XMRV link.
I am saving my hurrahs for when it is proven beyond doubt and therapies are available.
Thank you for saying about the unhealthy reverence - no-one else seems to have said that, and I read message boards sometimes wondering how many people could be broken if it doesn't happen.
Kate
Kate, I think if I were new to the illness I would be probably be hanging on every XMRV word too, but, as Cusp says, when you are an old timer you just feel jaded and perhaps more sceptical.
I'm very much of the 'seen it all before' opinion because so much past research has been inconclusive. I do wonder why after so long we are still no closer to an explanation, although there are probably financial and political reasons why research is piecemeal and underfunded.
(Political reasons being largely within the medical research establishments and certain camps being favoured over others when it comes to funding.)
I also believe that the reporting of ME is rather strange because it's always "used to be known as yuppie flu" and "is it all in the mind?" Are journalists too stupid to get beyond this? I once read an article/interview in which a journalist said that the psychological angle is all in the good cause of giving equal weight to "both sides" ie the physical versus psychological. Lack of public sympathy for a "mystery illness" which may be "all in the mind" isn't going to get public sympathy and consequently funding for research into physical causes.
I think you hit the nail on the head, Dig, research has been so far piecemeal and underfunded, hence no definitive answers. Still, I think XMRV is different in that on both sides of Atlantic there have been frantic attempts to prove/disprove, and I don't know of any other theories that have garnered so much media attention. The attention can only be good in moving awareness forward, but PWME should not get carried away til the science is conclusive.
I still have this gut feeling that CFS is really a cluster of diseases (or different 'versions' of the same disease that will require different treatments) grouped under the CFS tag. As hard as it is to get funding for research, if they look for only one answer to all and reject things that seem to apply to some subsets, it worries me that no solution will be found. (Hope this makes sense...I'm so foggy today, I hesitated to comment.)
Hey Katy, I guess the research has to start somewhere, and the passion behind the scientists involved in XMRV is great, my concern is more the response of many of those who are ill, they are acting as if XMRV *is* the answer and it is just a case of it being unravelled. I think if you are newer to the illness you are perhaps still in shock that your life has been turned upside down and are desperate for answers - I certainly was in the early years - but then you become more accustomed to it being the norm and your heart doesn't flutter at every 'breakthrough'.
Yes, I agree. Seven years and counting here. Too tired to flutter. The shocks still come periodically as I discover once again that what I hoped was bottom wasn't and I have to re-invent myself again. The palette of colors available for reinvention is very narrow this time.
Hello Katy, Yes, the illness is all about reinvention, I guess many chronic illnesses are, but this has the added hell of lack of belief and unpredictability of symptoms worsening. This is also of course why people are treating XMRV like the holy grail, they will finally have validation that they are physically ill.
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